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Author Topic: Just Tested Positive - Help a little freaked out!  (Read 17328 times)

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Offline andrew90

  • Member
  • Posts: 71
Just Tested Positive - Help a little freaked out!
« on: September 12, 2016, 11:17:52 am »
Hello im a young healthy 25 year old and during a routine wellness check i tested positive for Hepatitis C  im going to a Gastroenterologist Friday to speak with him and do further testing.

my main concern is insurance?. i no medications are expensive and im giving myself panic attacks worrying that they will not cover me because im young and fairly healthy as i can tell. ive never done IV drugs i have tattoos and used to MMA so im assuming somehow it was transferred that way.

i live in New Jersey

is this how it works? it seams these scary stories of denial online and its worrying me
5/1/17 UNDETECTED!

EOT Blood Testing 1/25/17
UNDETECTED!

Five week blood testing 12/8/16
DETECTED
Viral Load: 35(IU/mL)
AST: 34

Started Epclusa 10/2/16

Genotype 3a

9/19/16
Fibrosis: F2/3
ALT: 459
AST: 189
Viral Load: 6415894 (iU)/mL

Offline Mike

  • Member
  • Posts: 999
Re: Just Tested Positive - Help a little freaked out!
« Reply #1 on: September 12, 2016, 08:10:02 pm »
Hi Andrew,

Hang in there. There are many options available to those in need of treatment.

Take a step back, a deep breath and write some questions down to ask your GI, who should be able to answer them and provide you with treatment options.

We live in an age where Hep-C can be cured. That wasn't the case when I was dx'd, thus it didn't matter if you had insurance or not - a cure was well out of reach.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Just Tested Positive - Help a little freaked out!
« Reply #2 on: September 13, 2016, 11:51:30 am »
New Jersey is one of the states that tends to have better than average insurance coverage for hep C treatment. When the time comes, if you run into any obstacles we'll give you tips and resources to help with the process. However, I suspect you won't run into glitches. Now is a good time to focus on building your health.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline andrew90

  • Member
  • Posts: 71
Re: Just Tested Positive - Help a little freaked out!
« Reply #3 on: September 13, 2016, 03:43:36 pm »
Thanks guys after reading around the website a bit i am a little more relaxed.

https://www.amerihealthcaritasla.com/pdf/pharmacy/hep-c-treatment-guidelines.pdf
this is what my insurance states for Hep C treatment.

Page 3 seams to show you treatment summary for patients with no cirrhosis
seams my insurance will treat with Zepatier unless their is other circumstances.
im still worried about denial...you think i can call my insurance company and figure if they have specific Prior Authorization for the drug Zepatier example like... F score of 2 or higher?.

i don't see anything on the link i provided stating that but they do educate you on the scale.

Here are some results?

is this my viral load?

HCV RNA QUANT INTRP               
DETECTED

HCV RNA PCR IU/mL   6415894   (iU)/mL
HCV RNA PCR, LOG   6.81   Log IU/mL
« Last Edit: September 13, 2016, 04:12:55 pm by andrew90 »
5/1/17 UNDETECTED!

EOT Blood Testing 1/25/17
UNDETECTED!

Five week blood testing 12/8/16
DETECTED
Viral Load: 35(IU/mL)
AST: 34

Started Epclusa 10/2/16

Genotype 3a

9/19/16
Fibrosis: F2/3
ALT: 459
AST: 189
Viral Load: 6415894 (iU)/mL

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Just Tested Positive - Help a little freaked out!
« Reply #4 on: September 13, 2016, 05:32:43 pm »
Yes that is your viral load. The result reads as HCV RNA QUANT INTERP

Hepatitis C virus RNA Quantitative Interpretation

HCV RNA PCR
Hepatitis C virus RNA by polymerized chain reaction

and then the 2 scales IU/mL or Log scale IU/ML

The 2 numbers are the same quantity expresses in 2 different scales one just a normal counting scale the other is the same number but expressed on the logarithmic scale

Your viral load is 6,415,894 international units/milliliter or 6.81 log base 10 international units/milliliter.

While 6 million may sound like a lot we have many folks where with much higher viral load before treatment and just to add there is no relationship between viral load to severity of illness. One can have a high viral load (or for that matter ALT & AST levels) and have no liver damage or the reverse a low viral load and significant liver damage.

So dont let a 6 million viral load worry you it will soon be zero!

Have you been tested for genotype yet? Will your doctor be having a fibrosure blood test or a fibroscan test to see if you have any liver damage?
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline andrew90

  • Member
  • Posts: 71
Re: Just Tested Positive - Help a little freaked out!
« Reply #5 on: September 13, 2016, 06:20:27 pm »
My primary refered me to a Gastroentraaogist so I'm sure he will do the gene testing

I just got to make Friday come fast!

5/1/17 UNDETECTED!

EOT Blood Testing 1/25/17
UNDETECTED!

Five week blood testing 12/8/16
DETECTED
Viral Load: 35(IU/mL)
AST: 34

Started Epclusa 10/2/16

Genotype 3a

9/19/16
Fibrosis: F2/3
ALT: 459
AST: 189
Viral Load: 6415894 (iU)/mL

Offline andrew90

  • Member
  • Posts: 71
Re: Just Tested Positive - Help a little freaked out!
« Reply #6 on: September 26, 2016, 05:13:05 pm »
my Fibrosure came back




my Genotype test should come back within in a few days still "too soon"

surprised its progressed to f2/3 already makes me wonder when i was infected.
5/1/17 UNDETECTED!

EOT Blood Testing 1/25/17
UNDETECTED!

Five week blood testing 12/8/16
DETECTED
Viral Load: 35(IU/mL)
AST: 34

Started Epclusa 10/2/16

Genotype 3a

9/19/16
Fibrosis: F2/3
ALT: 459
AST: 189
Viral Load: 6415894 (iU)/mL

Offline Mike

  • Member
  • Posts: 999
Re: Just Tested Positive - Help a little freaked out!
« Reply #7 on: September 26, 2016, 05:32:36 pm »
Hi Andrew90,

That appears to suggest moderate fibrosis with moderate to severe inflammation.

My numbers were about the same, though confirmed by a biopsy.

This should qualify you for treatment.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline andrew90

  • Member
  • Posts: 71
Re: Just Tested Positive - Help a little freaked out!
« Reply #8 on: September 26, 2016, 05:36:34 pm »
Yeah I'm saddened by the extent but I'm happy that it's up there so treatment chance
is better with severity
« Last Edit: September 26, 2016, 05:51:19 pm by andrew90 »
5/1/17 UNDETECTED!

EOT Blood Testing 1/25/17
UNDETECTED!

Five week blood testing 12/8/16
DETECTED
Viral Load: 35(IU/mL)
AST: 34

Started Epclusa 10/2/16

Genotype 3a

9/19/16
Fibrosis: F2/3
ALT: 459
AST: 189
Viral Load: 6415894 (iU)/mL

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Just Tested Positive - Help a little freaked out!
« Reply #9 on: September 26, 2016, 06:09:58 pm »
The good news is you don't have cirrhosis. Once are cured you have a great chance for your liver to return to good health 
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Mike

  • Member
  • Posts: 999
Re: Just Tested Positive - Help a little freaked out!
« Reply #10 on: September 26, 2016, 06:21:11 pm »
The important thing is there is effective treatment. I was part of the PEG/weight-based Ribavirin clinical trials in 2000. This was state-of-art treatment at the time and I failed (had about a 25% chance of clearing the virus).

I was warehoused for 14 years and treated with SOL+INTF+RIBA in 2014 and cured in 12 weeks.

The inflammation waxes and wanes, and should subside. The inflammation can also be influenced by heavy alcohol consumption, and, if this is a factor, it can take about 90 days for alcohol-induced inflammation to settled down once you stop drinking. So stop drinking if you haven't yet.

An additional point: I never progressed beyond grade 2 fibrosis in 14 years. Another point is: You won't have to wait 14 years for effective treatment. It's here already!!!


Best wishes, Mike

Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline andrew90

  • Member
  • Posts: 71
Re: Just Tested Positive - Help a little freaked out!
« Reply #11 on: September 28, 2016, 04:14:59 pm »
Finished my Full Abdomen ultrasound.

came back normal except for mild inflammation in spleen

still awaiting my results on the gene type.

October 26th is my visit to go over results and start treatment.

my doctor told me he will start Authorizations before my visit so could be a good visit!
5/1/17 UNDETECTED!

EOT Blood Testing 1/25/17
UNDETECTED!

Five week blood testing 12/8/16
DETECTED
Viral Load: 35(IU/mL)
AST: 34

Started Epclusa 10/2/16

Genotype 3a

9/19/16
Fibrosis: F2/3
ALT: 459
AST: 189
Viral Load: 6415894 (iU)/mL

Offline andrew j

  • Member
  • Posts: 477
Re: Just Tested Positive - Help a little freaked out!
« Reply #12 on: September 28, 2016, 05:56:44 pm »
Sounds good, Andrew.


Offline Rosie13

  • Member
  • Posts: 297
Re: Just Tested Positive - Help a little freaked out!
« Reply #13 on: September 30, 2016, 12:28:45 am »
Hi Andrew, welcome to the forum! I read all your posts & you seem to have a good handle on this now. The viral load goes up & down so like Mike & Lynn said....don't worry. This year you should be able to get approved quickly as lots has happened since last summer when I was trying to get approved. The treatment is nothing to worry over either. I read about so many people who had kids, went to school, worked full time ...impressive! I took Harvoni but based on your genotype the Gastro Dr. will put you on the most effective treatment for your type. I had hep C for about 40 years & only knew I had it for about 5 years waiting for the medications to become available. Glad you will not have to wait! Looking forward to lots of good news coming your way.
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline LightBeingAtLast

  • Member
  • Posts: 31
Re: Just Tested Positive - Help a little freaked out!
« Reply #14 on: October 04, 2016, 10:26:20 am »
My viral load was >23 million when I started 4 weeks ago.  I won't be tested again until 12 week but my CBC's are normal for the first time in 40 years.

I was denied by insurance for 18 months, had to appeal four times.  Looking at your numbers I would be surprised if you were denied.  Hang in here. 

Light and love!

64 yo female
Dx Oct 20, 2000
Type 1b
VL 32 mil
Liver biopsy 1979 nonspecific reactive hepatitis
Liver biopsy 2001 stage 1 of 4
Liver biopsy 2007 stage 2
Fibrosure 2015  stage 2
2016 August liver scan stage 4
9/3/16  began Harvoni. Treatment naive.

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Just Tested Positive - Help a little freaked out!
« Reply #15 on: October 08, 2016, 12:00:45 pm »
Thanks for being the voice of hope. Keep us posted!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline andrew90

  • Member
  • Posts: 71
Re: Just Tested Positive - Help a little freaked out!
« Reply #16 on: October 21, 2016, 08:51:50 am »
Just left gastroenterologist

Genotype 3A

Doctor typically uses Harvoni but since it won't work for my genotype I'll be his first Epclusa

Hopefully approval is a breeze
5/1/17 UNDETECTED!

EOT Blood Testing 1/25/17
UNDETECTED!

Five week blood testing 12/8/16
DETECTED
Viral Load: 35(IU/mL)
AST: 34

Started Epclusa 10/2/16

Genotype 3a

9/19/16
Fibrosis: F2/3
ALT: 459
AST: 189
Viral Load: 6415894 (iU)/mL

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Just Tested Positive - Help a little freaked out!
« Reply #17 on: October 21, 2016, 12:57:39 pm »
Keep us in the loop - hoping to be celebrating your freedom from hep C at the end of your treatment!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline andrew90

  • Member
  • Posts: 71
Re: Just Tested Positive - Help a little freaked out!
« Reply #18 on: October 26, 2016, 03:37:16 pm »
Approved Epclusa now just working with the specialty pharmacy to set delivery seams first Specialty pharmacy my insurance wont cover so had to jump around to another one.
5/1/17 UNDETECTED!

EOT Blood Testing 1/25/17
UNDETECTED!

Five week blood testing 12/8/16
DETECTED
Viral Load: 35(IU/mL)
AST: 34

Started Epclusa 10/2/16

Genotype 3a

9/19/16
Fibrosis: F2/3
ALT: 459
AST: 189
Viral Load: 6415894 (iU)/mL

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Just Tested Positive - Help a little freaked out!
« Reply #19 on: October 26, 2016, 09:16:18 pm »
Fantastic!!!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Grateful Gmom

  • Member
  • Posts: 27
Re: Just Tested Positive - Help a little freaked out!
« Reply #20 on: October 28, 2016, 11:50:26 am »
Andrew, Congrats on getting approved and living a long life with this behind you!! I'm starting my second week of treatment tomorrow as well as my husband. Let us know when you start :)
Blood Transfusion 1986
Treatment naive
Gen 1a
F2/3
3.5 million
Harvoni ordered for 12 wks, approved for 8

Offline Rosie13

  • Member
  • Posts: 297
Re: Just Tested Positive - Help a little freaked out!
« Reply #21 on: October 28, 2016, 01:33:47 pm »
Congrats Andrew! The hardest part is over... the bureaucracy! I'm hoping to follow your healing & Grateful Gmom & hubby too..so we can have a triple conga line very soon!
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline Grateful Gmom

  • Member
  • Posts: 27
Re: Just Tested Positive - Help a little freaked out!
« Reply #22 on: November 16, 2016, 03:59:57 pm »
Thanks Rosie!!
Update-4 weeks into Harvoni for both of us and undetected on our labs today!!! Ready for a subdued conga line dance!!
Blood Transfusion 1986
Treatment naive
Gen 1a
F2/3
3.5 million
Harvoni ordered for 12 wks, approved for 8

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Just Tested Positive - Help a little freaked out!
« Reply #23 on: November 16, 2016, 04:30:29 pm »
EXCELLENT NEWS, GG!!!!!!!! Thanks for sharing, FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline Rosie13

  • Member
  • Posts: 297
Re: Just Tested Positive - Help a little freaked out!
« Reply #24 on: November 16, 2016, 11:18:30 pm »
Grateful Gmom, this is just the start of the celebration! 4 weeks undetected is a good sign for the rest of your checkups. Oh Yeah!
Future thinker, you are clear too right? I am just so happy for you guys. This is the one year anniversary of my treatment . I finished right around Thanksgiving 2015. yesterday I had a screen guy working @ my house & he was telling me about his wife, a nurse, who got HepC from a medical mishap many years ago & he had no idea about me so I was just  telling him that she has my thoughts & prayers for a successful tx. I was gathering numbers & organizations for her to call for help with copays etc. thinking about her in her first few days of treatment. so blessed.
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Just Tested Positive - Help a little freaked out!
« Reply #25 on: November 17, 2016, 10:03:29 am »
Hey Rosie13 -- HAPPY ANNIVERSARY!!  What a great time for you!

Yes, I did reach SVR 12 back in August; am now 6 mos  post-treatment and really starting to feel much better, more energy, just so grateful!  Have 1 more visit in Feb. w/ my hepatologist for my last check-up. This is a journey that seems to take some time to fully feel the benefits for many of us.  I guess patience is a virtue, right?

We all have a lot to be grateful for this Thanksgiving season.  Take care, FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline andrew90

  • Member
  • Posts: 71
Re: Just Tested Positive - Help a little freaked out!
« Reply #26 on: November 17, 2016, 06:12:19 pm »
Woohoo just hit my 2 week 1 day mark :0

Feeling great

Congrats on defeating the demon


"Can you hear that music?"
5/1/17 UNDETECTED!

EOT Blood Testing 1/25/17
UNDETECTED!

Five week blood testing 12/8/16
DETECTED
Viral Load: 35(IU/mL)
AST: 34

Started Epclusa 10/2/16

Genotype 3a

9/19/16
Fibrosis: F2/3
ALT: 459
AST: 189
Viral Load: 6415894 (iU)/mL

Offline Grateful Gmom

  • Member
  • Posts: 27
Re: Just Tested Positive - Help a little freaked out!
« Reply #27 on: November 17, 2016, 07:14:33 pm »
Thanks guys!!! It's odd to be typing this in a non detectable mindset, still hasn't sunk in!! For months it's been "well if this works, and what if, and wonder what"
Now, oh yes.....
I AM FREAKING NON DETECTABLE AFTER 4 WEEKS!!! Yes I'm shouting, lol
Seriously though, with my husband and I starting treatment exact same day and getting 4 week results same day, the roller coaster ride of emotion is now a smooth ride on the Harvoni train!! The aching is still prevalent throughout the day, but I say it's the meds blasting the blood clean in every nook and crannie.
Andrew, any idea on what your meds cost retail, just curious?
Thanks for the thumbs up everyone, so blessed, so grateful....
Blood Transfusion 1986
Treatment naive
Gen 1a
F2/3
3.5 million
Harvoni ordered for 12 wks, approved for 8

 


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